This Dying Matters Awareness Week we explore how we communicate with families who have experienced a bereavement at Demelza, and why it’s so important to get it right.

At Demelza, Dying Matters Awareness Week is an important week in the calendar; it gives us an opportunity to start and continue the conversations about death, dying, and grief which are all part of the important care we provide. This year’s theme, “The way we talk about Dying Matters” focuses on the language we use and the conversations we have about these often-sensitive subjects.

We recognise that when a family we support loses a child, they are changed forever by that experience – and the way we communicate with those families has to change with them. Naomi, our Family Communications Officer, describes how we approached this process.

“My role is all about the way we communicate with families, and coordinating those communications across Demelza. Part of that is how we can improve our communications, so when I first started in the role I met with different teams to identify where there was a need for this – I wanted to learn what families were asking for, and also what communications we were lacking.

In one of these meetings Jo – Demelza’s Psychotherapeutic Services Lead – suggested we should have a newsletter specifically for families who have been bereaved. The idea was to give those families a way to keep in touch with Demelza, to know what support, events and resources are available to them, and to give them opportunities to engage as much or as little as they feel comfortable. It needed to be quite different from what’s on offer for other families, from the language we use to the tone we communicate with.”

From this conversation, Naomi and the team began working on a new newsletter, which would eventually be fittingly named the In Touch Newsletter. “From the beginning it’s been a really lovely newsletter to work on,” says Naomi. “We wanted to make it quite personal, so each edition begins with an introduction to a new colleague at Demelza – to show families that we’re all here to support them, and the different ways we can support them. In nearly two years of doing this newsletter we haven’t run out of people to introduce, which goes to show the breadth of the support network we have for bereaved families.”

The newsletter goes on to share information with families about our upcoming events and activities – these include our regular remembrance events (held four times a year), as well as more informal opportunities for families to meet up and connect with like our online and in-person cafés, as well as groups for bereaved grandparents and bereaved dads and male carers, respectively.

“We also have a Demelza Share section, usually written by Jo, which reflects on something that’s happened recently,” says Naomi. “That might be Remembrance Day or Valentine’s Day, for example, or something in the news. Jo will use this section to talk about the impact these events might have on someone who is going through the grieving process. It’s written very differently from our other communications; the tone is much more considered and therapeutic.”

The newsletter rounds off with a section on Demelza’s sibling support, where we share information, resources (both internal and external), and other avenues of support for children whose siblings have died.  

The newsletter has marked a clear shift in how Demelza communicates with bereaved families, as Jo shares: “From the start it’s been about the newsletter becoming a constant and reliable form of support, that shares how we remain present and what form our support can take. This gentle approach then allows families to connect with us when they are ready to engage, at a time that's right for them and to choose the level of direct contact that feels appropriate. In Touch also role models growth and changes shape through the year, something that mirrors the nature of grief.” 

This work is so important for families, but also has an impact on the Demelza colleagues who work on it and how they approach conversations about grief. “The process of working on the newsletter has been uplifting; it’s taught me a lot about grief and how to talk about it,” says Naomi. “I’ve learned that families still want to come together and talk about their children after they’ve died, to say their names and share memories. It’s always important to us that this newsletter isn’t just one-way communication, we’re not talking at these families – we’re helping to bring them together to get to that place where they can get talking and support each other.”

Read more about how Demelza helps to make a difference to bereaved families